Agenda Friday 22 November 2019
One word of wisdom, possibly
From our leader, Jim
Any member who wishes to tell their personal prostate cancer story, update a story we have heard, or ask a question is welcome.
Apology? Then, post a reply on the forum. Start with the Go to this Topic button (bottom of this email).
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Something like: 'Bill Smith from Perth' would work well.
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9:30am - 11:00am Eastern Standard Time (Queensland)
The formal phone-in meeting ends after 90 minutes.
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Sydney, Melbourne, Hobart 9:30am
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Maybe you haven't had access to the agenda or you have late breaking news you would like to share. Tell the chairman here at the beginning of the meeting that you would like to speak, and he will fit you in - probably later, perhaps right now if that suits.
Special expert guest speakers
Roundtable - new stories, updates, questions
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Future phone-in support group meetings
Fourth Friday of each month, except:
January (One week late for Australia Day)
December (One week early for Christmas)
Phone-in support group meeting dates 2019
20 December (one week early for Christmas)
Phone-in support group meeting dates 2020
17 January (one week early for Australia Day)
18 December (one week early for Christmas)
Changes or questions
If you wish to update us about any changes in your health or treatment, or have a question you would like answered or discussed, or you would like to talk about joining a teleconference group, let us know. Then we can put it high on the agenda so it doesn't get lost - just reply to this email, or use Contact Jim on JimJimJimJim.com.
South East Queensland and Northern NSW
Saturday 7 March (Greenbank)
Saturday 6 June (Tweed)
Saturday 7 September (Greenbank)
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Saturday: to be announced
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11:00am for lunch at noon
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My picture is the same as yours, I am 63yrs old and had a disastrous robotic prostatectomy in 2010 by a person I would call incompetent. My gleason 6 cancer must have been spread by the biopsy or mechanical means with the robotic surgery.
None the less my PSA began to rise about 11 months post surgery and has continually since with a few tests showing pause and in some cases temporary reduction. My results at the moment is my PSA is .18 and last test in May 19 was .24.
It seems Australia is the only country where .1 means biochemical recurrence and the rest of the world is .2.
I am faced with the same decision making issues you have and I have decided to hang in there and watch and wait. I am waiting for immunotherapy to come of age and at the moment it is probably 3 yrs or so away. There is trials being performed now. I intend to wait till they have killed a few hundred or so before I roll up, that will give the specialist time to perfect the cure. I am serious about my path for cure as NONE of the treatments currently available offer a cure.
Another man local to me has had radiation to the pelvis with exactly the same story, that is the cancer might be local in the pelvis so "let's just blast it anyway"... No evidence and No guarantee it will do anything but fill the radiologists pocket with money! It's a worry! He is just about finished his radiation course so I will catch up and see how he went.
Dr Bert Vorstman (USA) suggests a negative full body scan may mean the microscopic cells might already be in the bone marrow... if so radiation to the pelvis will not only cause serous damage to the local organs and blood vessels but subject you to cancer in the future.
I am glad you are cautious because every step from here is downhill with any of the treatment options offered. You'll notice I said treatment not CURE.
Oh, I forgot to mention Australia seems to be so backwards in PCa treatments, you'll notice when you research enough that this is so.
This website publishes many interesting article about trials and outcomes....
all the best and don't panic, take your time and research every angle of any options offered.
If your Psa is only 0.19, then why be so worried? At age 62, my Psa went to 5 in 2009, I got biopsy at Psa 6, Gleason 9 was found, and open RP attempted in 2010, and PG was inoperable with Psa at 8. No mets were found, but there was no PsMa scan at that time.
So I was assigned to begin begin ADT for 2 years and got 70Grey EBRT after first 6mths ADT. This didn't work because once I paused ADT after 2 years to see if it had worked Psa whooshed up from 0.08 to 8 in 6 months as T came back to a normal level. I recommenced ADT and am still on it, and it lasted to 2016 with help from Cosadex then Zytiga added.
By them all my sexuality was exterminated but didn't matter at all because I was alive not dead, and I didn't have a wife to please.
I kept both body and mind fit by cycling 220km a week. Psa has been up and down like a yo-yo and highest its been was after 5 chemo shots in October 2018 when it went to 50, after beginning chemo at 12. Chemo failed, I knew it would, my oncologist said it would, and it did, so he referred me for Lu177.
I got a few PsMa scans after 2016 when Psa was about 5, and saw the growth of many lymph node mets and bone mets and there wasn't anything I could have done to avoid that before 2016 when getting Lu177 wasn't a choice I could make easily.
But in November 2018 I began Lu177 given at Theranostics Australia clinic in Sydney, and Psa was 25. I began Xtandi after 3rd Lu177 shot, and now, after 4 shots of Lu177 and 5 months after last PsMa scan that told me I had nothing more to worry about, Psa has gone down more and was 0.32 a week ago, and so things look good for me, I might get repeats of Lu177 if it comes back, but seems like I should live another 4 years to 76.
I had a pause off the bike for 3 months last winter but am back to 220km a week at 72yo.
I've just survived 10 years since diagnosis. But Pca would have started in 2004, but nothing was done until Psa went to 5, so I had low Psa for larger amount of Pca. Not a good start for treatment to begin.
But a friend of mine died within 3 years of diagnosis that seemed so treatable at first, but his Pca mutated so fast it overwhelmed whatever his best doctors in Oz could do for him.
I have another friend who had unknown cancer in his neck about 12 years ago, at about 65, and then minor op, RT, chemo, and after surviving that he gets Pca, has RP, undetectable Psa for 3 years, but it slowly rises, so he had same70Grey EBRT that I had, Psa went undetectable but at 79 its on the rise again, and he's scared. He's never had ADT. But his sexuality was also exterminated too early, when he had a lady pal still able to do it.
ADT side effects may not affect him much but might hold down Pca for years.
But his Pca is nowhere near being able to kill him soon, so worrying a lot about it is pointless. I have had to learn to live with Pca as a chronic condition, and despite me feeling Pca could have me in palliative care within a year at any time over last 9 years after 2009, I really didn't worry too much about how long I had left because I kept asking doctors what could they do, where could I get some good treatment and I read all I could about Pca online, and talked to many about latest treatments such as Lu177. Luckily, doctors like seeing me turn up for a talk dressed in lycra, and doing all I could myself to stay healthy, and found solutions that were available outside the public hospital system. Lu177 has turned out to be the best treatment so far, and had it been available in 2009, I may have done well, but then it could have come back, and there's only so many repeats of Lu177 that a man can have.
The trouble with Pca is that you can have a pile of treatments when Psa is low, and the darn thing still grows back like an unwanted weed that you can't get rid of in your garden of life.
IMHO, you must keep fighting, but there's a point where whatever treatment you might like or have faith in may give you a pile of side effects that you have to suffer sooner rather than later, and still not get a cure.
Not many men get into remission with Pca. We would like it to happen, but it just does not happen and best we might hope for is that we have it under control when something else takes us out.
PSMA detection is better at higher PSA.
Detection rates of [68Ga]THP-PSMA PET/CT increased with increasing PSA level in this particular PSMA scan:
94.1% for a PSA value of ≥10 ng/mL,
77.3% for a PSA value of 2 to <10 ng/mL,
54.5% for a PSA value of 1 to <2 ng/mL,
14.3% for a PSA value of 0.5 to <1 ng/mL,
20.0% for a PSA value of >0.2 to <0.5, and
22.2% for a PSA value of 0.01 to 0.2 ng/mL.
I had recurrence detected in my prostate when my PSA was 0.029